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Patient Stories

Madison Shaw: 2019 Rare Impact Award Honoree

Living through a lengthy diagnostic odyssey is unfortunately very common for rare disease patients. Madison “Maddie” Shaw’s journey to diagnosis took place over an intense and frustrating two and a half years… Read More

Donna Appell, R.N.: 2019 Rare Impact Award Honoree

When Donna Appell’s one-year-old daughter Ashley exhibited frequent and unexplainable bruising, Donna turned to her toddler’s pediatrician for answers. She was told that the bruising was “easier to see” because of Ashley’s… Read More

Rare Disease Day 2019 Notes and Successes

This year, NORD launched the #ShowYourStripes awareness campaign in time for Rare Disease Day (RDD) with a goal of increasing attention on rare diseases and engaging our community. Judging by the number of events,… Read More

Misconceptions about living with a rare disease – the community weighs in

A few weeks ago, we asked the community what some misconceptions were about living with a rare condition. The Mighty collected your responses and published them in the article below on February 28 for Read More

Ben’s Story in Honor of Rare Disease Day

The following story was submitted by Leah Schust in honor of Rare Disease Day. In this story, Leah shares her family’s journey of searching for and receiving a diagnosis for their son,… Read More